Local HIV/AIDS activist invited to the White House to share best practices

HIV/AIDS activist Josh Robbins has been invited to participate in a brainstorming session regarding outreach communication methods for the National HIV/AIDS Strategy. The comprehensive, national HIV/AIDS strategy is overseen by the White House’s Office of National AIDS Policy (ONAP) and is current being updated.

Robbins, a Nashville-based activist who rose to national prominence via his website I’m Still Josh which he developed upon learning of his own HIV+ status, told O&AN that the invitation came as a surprise. He leaves for Washington early next week.

“It’s one of those cool moments where you ask, not expecting anything,” Robbins said. “I was asking in general because we aren’t included in the current plan and we should be. So it was a cool moment: you’ll never receive if you don’t ask. I asked and I was kinda shocked.”

The invitation arose directly from a comment Robbins made a week ago at a regional forum for the national AIDS strategy held in Nashville. He asked representatives of ONAP if independent HIV activists — individuals like Robbins who are not directly affiliated with or employed by an HIV/AIDS service organization — could participate in the development of the new five-year plan.

According to Robbins, the ONAP tour is “a listening tour because they’re getting ready to prepare the next five-year presidential AIDS policy plan. They want to allow members of the community and stakeholders to listen to their ideas, offer opinions, and ask questions.”

Douglas Brooks, the current director of ONAP and the President’s lead advisor on domestic HIV/AIDS, was in Nashville on Friday, April 24, 2015, as part of a series of four regional strategy forums. “Sustained and ongoing dialogue with communities around the country, including state and local health officials, community based organizations, medical and social service providers, and people living with HIV” is central to the success of HIV/AIDS policy, according to ONAP. The program in Nashville was billed as “Increasing Access to Care.” The program, held at the Nashville Public Library, hosted a veritable who’s-who of HIV policy advocates.

After the team presented data related to our region, they then allowed people to ask questions or offer comments, giving each person about two-and-a-half minutes to speak.

“I got the opportunity to speak about the power of independent HIV activists,” said Robbins. “In the previous National HIV/AIDS Strategy plans there really wasn’t any room made for, or even acknowledgement of, independent activists, those not attached to organizations or nonprofits.”

In his brief time, Robbins covered a lot of ground. “I talked about the power and reach that independent activists have developed. I also talked about my meeting with Ambassador Deborah Birx [Coordinator of the United States Government Activities to Combat HIV/AIDS and U.S. Special Representative for Global Health Diplomacy] in March, about how she said she was surprised about the amount of independent activists and their reach, in our area especially. She expressed surprise that she didn’t know us. I told them what I told her: the reason you don’t know us is that we aren’t at the table, and if you bring us to the table we might just have some things to offer!”

In the end, Robbins posed the question, “Can independent HIV strategists have a seat at the ‘wooden table,’ not the plastic table the kids sit at?” In support of his suggestion, Robbins named a number of activists, some of whom would have been familiar to Brooks, as well as innovative approaches independent activists have taken.

For instance, Robbins mentioned his own app, AskHIV, “a peer-to-peer network that I was able to launch for just $130.” By comparison, HIV organizations are fretting over decreased funding for their multimillion dollar budgets. “If funding is being cut and organizations are freaking out,” Robbins opines, “that’s why you want us on board. We have experience launching campaigns with zero support and no cash, that’s what we bring to the table.”

Brooks was magnanimous. “He smiled and asked me my name,” Robbins recalled, “and then he invited me on the spot to come to the White House on Monday [May 4, 2015] and there would be a closed door meeting, a brainstorming session. Within fifteen minutes I had an email from the White House inviting me.” According to the invitation, Robbins’ meeting will be centered around exploring “more effective communications, messaging, and digital strategies” related to ONAP’s updated National HIV/AIDS Strategy.

The invitation was very short notice and as such the cost of travel was high. “Historically, no one in our community funds anything that’s independent,” Robbins said. “I can’t apply for any kind of money for my blog, and since it doesn’t monetize and I can't get support, I’m kind of left to foot the bill. It’s very expensive.”

So after talking with a consultant about the possibility of receiving support, Robbins reached out to a local community organization. “Financial support to make the trip to The White House possible for me is being provided by The Nashville Health Management Foundation's hivmidtn.org initiative,” said Robbins. “I am a community partner of NHMF, and I am so humbled by their generosity."

According to Robbins, the hivmidtn.org initiative is “a community clearinghouse of HIV/AIDS information for Middle Tennessee: they don’t offer HIV services but their site helps you navigate the system. The work they do is really important: it’s key that people know what their options are.”

The United States government has come a long way since its early and infamous history of denial and misinformation. In recent years, the White House’s Office of National AIDS Policy oversaw and guided the development of the comprehensive, national HIV/AIDS strategy. The goal of this strategy, as Barack Obama said in 2013, is reaching a day “when all men and women can protect themselves from infection, a day when all people with HIV have access to the treatments that extend their lives; a day when there are no babies being born with HIV or AIDS, and when we achieve … and AIDS-free generation.”